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Vatican City, May 19, 2017 / 03:24 pm (CNA/EWTN News).- Pope Francis’ gathering this week with a group of Huntington’s disease patients was a major inspiration for those seeking to increase awareness and research about the condition.

“In the U.S. this is HD Awareness Month, so we're working on just telling the story of families affected by Huntington’s disease, and this brings it to a whole different platform,” said Louise Vetter, CEO of the Huntington’s Disease Society of America.

“Really, with Pope Francis setting the tone I think it offers so much hope and inspiration.”

On Thursday, Pope Francis became the first world leader to publically recognize the plight of those suffering from Huntington’s disease, as he welcomed an audience of some 150 people with the condition. The pontiff stayed for nearly an hour after the audience to offer each individual a hug and a greeting.

Huntington’s disease (HD) is an incurable genetic brain disorder characterized by rapid, uncontrollable muscle movement known as chorea. As the disease progresses, it can lead to loss of control over speech and memory, dementia and death. 

The gene which causes Huntington’s was discovered nearly 25 years ago, but there is still no cure and relatively limited treatment options.

This is especially true for people living in South America, where prevalence of the disease is almost 1,000 times higher than in the rest of the world and often combined with extreme poverty. Because the disease affects families generationally, they are often caught in a cycle of need.

In 2013, Ignacio Munoz-Sanjuan, a neuroscientist working to develop treatments to fight the progression of Huntington’s disease, traveled to South America to see first-hand the difficulties faced by communities with high numbers of Huntington’s patients, particularly in Venezuela and Colombia.

While there, he noticed that a lot of the help people needed wasn’t related only to the immense difficulties of the disease, but had even more to do with living in conditions of extreme poverty, such as no food, no water, no clothes, poor housing, and almost no medical support. 

This led to his founding of Factor-H, a humanitarian project specifically to help with non-medical related issues for people in communities with high concentrations of Huntington’s patients.

One of the biggest problems faced there, he told CNA, is that there is no institutional support to provide food or assistance to the communities.

People aren’t able to work because they are often caring day and night for multiple terminally ill family members. And in some communities, “people barely have enough food to eat once a day. They have no sanitation, no running water,” he explained.

Compounding the challenge is the fact that many Huntington’s patients require up to 5,000 calories per day – more than twice the caloric needs of an average healthy adult. Finding adequate nutrition when food is already scare is often impossible.

“In one of the towns in Venezuela, probably the biggest cluster (of Huntington’s patients) in the world, I met a Catholic priest who is there locally and who is trying to do what he can, but there's nothing institutionalized.”

Munoz-Sanjuan found it very difficult to find ways to help in Venezuela and ran into a lot of roadblocks. It’s hard to send money because of the rate of inflation, he said, and after the border with Colombia was closed he could no longer send food via the neighboring country.

He said that he thinks the more people know about the problem, though, the more they will want to help.

“The problem is concentrated in a few locations and there are not that many people, a few thousand people affected in each one of these towns, so it's a manageable problem if we get organized. But I think that's really where the Church can play a big role,” he said.

Because the disease is relatively rare, it is not well-known, and non-governmental organizations generally focus their support elsewhere.

Munoz-Sanjuan also felt “that the scientific community owed something back to those people because they participated in studies for many years that led to the cloning of the gene, but they still don't have access to the genetic test and really things haven't changed much for them.”

“I thought that one of the few institutions that could potentially help would be the Catholic Church,” he said.

This gave birth to the idea for the global meeting at the Vatican and the audience with Pope Francis, which took place May 18 with some 1,700 people from 16 different countries.

The meeting with Pope Francis was called “HDdennomore” (pronounced “hidden no more”) and put on in special solidarity with South America. Two families from Venezuela, two from Colombia, and one girl from Argentina – all affected by the disease in different ways – were brought to the Vatican by Factor-H to meet the Pope.  

Present at the audience, in addition to 150 Huntington’s patients, were members of the medical and scientific communities who treat patients with Huntington’s and perform research on how to prevent the disease or slow its progression.

“I know there are some people from Caritas and some cardinals that are really interested in helping, but I think that most Church officials, like many people in institutions, have never really heard of the disease, or the magnitude of the problem in their countries,” Munoz-Sanjuan said.

He hopes this event is the beginning of a conversation and will help shine a light on the disease and on what the conditions are like in many communities. 

For Vetter, the meeting was a big step forward in efforts to combat the “devastating illness.”

“We really have a call to action to raise awareness of Huntington’s disease and the need for community to really be involved caring for these families,” she said.

“We're thrilled to be part of this global effort and be able to pull off that shame and offer the opportunity for these families to feel validated,” she continued. “To be able to help society offer that reassurance and for the Church to really set that tone – it’s incredible.”
 

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Rome, Italy, May 19, 2017 / 06:09 pm (CNA/EWTN News).- Apostolic nuncios attended a crash course last year on gender from an expert in the field, who stressed the need for the Church to develop a unified strategy, based on the faith's basic principles, in fighting gender ideology.

First, “we Christians, and certainly our bishops and nuncios, need to be convinced about our principles, the principles of our faith,” Fr. Robert Gahl told CNA May 16. “We also need to have a thought-through understanding of those principles, also regarding the human body.”

He stressed the importance of remembering that “humanity has been saved fully, that we are redeemed also in our sexuality.”

This implies a daily struggle and fight with original sin, he said, explaining that “the redemption of our own embodiment and therefore of our own sexuality and complementarity” is a task each person must carry out daily.

Secondly, he said, “the Church needs to act together, so that it be in concert, because we’re more powerful when we act together.”

Acting together doesn’t mean that everyone has to do the same thing, but rather that by seeking guidance from the Church on how to handle modern issues such as gender, individuals will be able “to act in a way that will be more effective in the public square.”

Fr. Gahl emphasized that the present time “is a crucial moment for the bishops to help to intervene and to help coordinate so the market can produce sound alternatives that also agree with our conscience and our religious belief.”

Both individuals and institutions “need to have instruction and guidance” from bishops, he said, noting that “many people are waiting for that and at times, unfortunately, it’s missing, because the bishops aren’t sure what to do because things are changing too rapidly.”

Fr. Gahl, a priest of Opus Dei, is an associate professor of ethics at the Pontifical University of the Holy Cross who has authored numerous publications on sexual ethics and moral action, among other topics.

He was chosen to lead a course for some 140 apostolic nuncios held during a Sept. 15-17, 2016, jubilee weekend dedicated to them, during which they met with the Pope and had several rounds of catechesis.

One of the courses the nuncios attended was that on gender offered by Fr. Gahl, who spoke about the rising threat gender ideology poses throughout the world, its political and ecclesial implications, and the strategy the Church must develop to effectively oppose what is often a very savvy communications strategy from the other side.

“This is really fascinating … the challenge the nuncios have,” Fr. Gahl said, explaining that he tried to give them space in the course to reflect critically on their work, in which they both coordinate among bishops and serve as diplomats.

“Gender ideology is threatening the freedom of religious expression, religious belief, and the freedom of the Church as an institution in many places, and in the places where it’s not being threatened, it probably will be threatened very shortly,” the priest explained.

Therefore, the nuncios have the challenge “of observing, addressing and helping to guide and instruct the bishops in each country so the Church can have a concerted strategy” in defending the Church as an institution and all believing Christians against this “wave of manipulation of human dignity.”

However, Fr. Gahl said he disagrees with those who claim the push for gender ideology comes from “some malicious political strategy or that it’s motivated by some evil intent, or people who claim that there is some kind of material gain from it.”

Instead, he voiced his belief that most of the pushing is being done by people with “a good intention” who are truly convinced it is for the betterment of humanity. “I see it as being rooted in a view of the human being …  that comes out of post-modern philosophy,” he said.

This notion, the priest said, is what Benedict XVI described as “a nihilistic understanding of freedom, such that we are each our own creator.” In this view, God is replaced and we can each create ourselves in the image of whatever we would like to be, rather than receiving our nature from another as a given.

“What’s really horrible about this is it means we have no intrinsic dignity. No one has intrinsic dignity, no one should be respected for who they are, but they should be respected for who they think they are,” Fr. Gahl said.

The priest said it was providential that he gave his talk during the Jubilee of Mercy, because he was able to contextualize it within Pope Francis’ emphases on tenderness and compassion.

“My entire conference was infused by this effort to say we should be understanding toward people, we should be compassionate to them … especially people who are suffering from some form of gender dysphoria,” he said.

Rather than being condescending, the priest said we ought to try to understand and appreciate the view of the other, showing compassion in order to “help them in some way to achieve a full flourishing and health according to who they are.”

Fr. Gahl said his course provided a unique space for the nuncios to ask questions and exchange ideas.

Because of their position, nuncios typically come to the Vatican on an individual basis and “basically never have the opportunity to all get together and discuss important issues,” he said.

While his course was in many ways an exceptional opportunity for nuncios because of the jubilee, Fr. Gahl said he believes it would be useful to have nuncios come together more often to discuss timely problems the Church is facing today.

Even if they come in smaller groups divided by region or language, “perhaps there’s some way … in which that could be done in the future,” he suggested.

During discussion after the course had ended, nuncios brought up various concerns, Fr. Gahl said, noting that at least one comment was made on the need to convey “an awareness and a savvy” on the issue to seminarians.

It must be now taken into consideration that “men going into seminary today are already influenced by this [gender ideology] in the culture, so they need to receive a formation that is going to help them be mature in their own masculinity in order to help them become spiritual fathers.”

Fr. Gahl said he was impressed by the resonance among the nuncios in recognizing the importance of the gender issue, and noted that he often emphasized the need to utilize new media better, given its influence.

Pope Francis “is very concerned about what he calls ‘ideological colonization,’” the priest said. “He’s especially concerned about the educational process of how there are schools that are indoctrinating children with propaganda that is ideological that is contrary to even a scientific or Christian understanding of the human person.”

In Francis’ view, “this as an intrusion or a violation of the rights of the parents, who are the principle educators,” Fr. Gahl said, noting that this is evidenced in many of the Pope’s writings.

“He sees gender promoted as an ideology,” the priest said, clarifying that when he refers to ideology, “not everything gender is ideology. But it is an ideology when it puts people in categories that conflict with their biology and boxes people in and forces people at times to become something that they’re not.”

“It imposes upon other people styles of life that are contrary with reality. Contrary with the understanding that marriage is between a man and a woman,” he said, adding that “the Pope is very concerned about this,” and is emphasizing the need for complementarity.

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